Various family and friends all visiting today. Both my lovely sisters (with Frank), and my daughter Mary with her lovely manager Michelle, updating us on Mary’s recent album launch of Elytral. Great review on the Wall Street Journal too. Followed by very useful afternoon visit by excellent Occupational Therapist bearing useful kit.
Time for a major update
A lot has happened since I last posted. Been very busy with various appointments. A few crises which I shan’t bore you with. Final Radiotherapy session at Addenbrookes hospital due tomorrow. Despite my prior anxieties, apart from a fuzzy head, so far so good. No indication yet whether my symptoms might be reduced by the treatment, but the effects of radiotherapy take time to manifest.
Great support from Occupational Therapy, having to find new ways of moving around and dealing with my lack of balance. I’m amazed at help available on NHS.
Lavinia arranged for a few of my ex-work colleagues to drop in for a chat yesterday. My big sister Gill is about to arrive on the train, which will give Lavinia some much needed moral support.
My mood has become somewhat more realistic, so I now have some moments of deep and appropriate sadness too. Determined to avoid self-pity.
Back at Addenbrookes again today courtesy of Son Paul
Third of 6 radiotherapy sessions today
Big thanks to Vince for taking me to Addenbrookes hospital today, giving Lavinia a break.
First of 6 radiotherapy sessions today
So far so good. Told to expect fatigue to develop slowly. Actual X-ray exposure time very short.
Dancing in the Light!
Thank you all so much for enabling me to “dance” with you all in Cambridge last night. Being able to see the space transformed my ability to balance. Huge thanks to Jason, and the team, and everyone else, for an illuminated evening I will never ever forget.
Acceptance of Mortality
My disease is mutifocal glioblastoma, a terminal condition. Instead of localised (and isolatable tumours), this is a distibuted tumour, making it more difficult treat using focussed radiation. The median life expectancy is 6 months with radiotherapy.
When people hear the news, their reactions fall into one of two categories:
- Denial, because they have yet to encounter the truth of their own mortality. They need to do something to fix me, to stop me dying. This is understandable in their context.
- Acceptance of death and birth as the two ends of the same journey, to be celebrated equally. The recognition that I am going to die, and that the quality of my remaining time is what is most important to me.
Wedding Anniversary
Yesterday Lavinia and I celebrated the Nine years since we were actually married, and more than a quarter Century of a wonderful life together, (by coincidence yesterday would also have been my Father’s 100th birthday too, but he only lived until the age of 57!). There are many less fortunate folk, so I can only feel gratitude for the years we have shared together.
August 18th update
Excellent meeting with Addenbrooke’s radiology team. Two whole hours with various medics, all of whom gave me great confidence that they understood my condition, and especially how to treat it to maximise my quality of life in the forthcoming months.
The plan is to go ahead with radiotherapy. Next Friday I will come for a “mask” fitting and a further scan to precisely define the tumour treatment area, and maintain my head in alignment during the radiotherapy exposure time. The following 2 weeks I will come for 6 radiotherapy sessions, 3 per week. This may well cause some additional loss of motor functions but should slow the overall deterioration in the longer term.
I’m hoping not to lose control of my right hand (Jokes to be inserted here!). I am led to expect fatigue towards the end of the radiotherapy sessions. So now I have a week to get on with life again, and feel so blessed to live in a country where outstanding healthcare is provided at zero cost when required.
Biopsy identity confirmed
Today’s meeting at Addenbrookes Hospital has confirmed that it’s a single but multifocal glioblastoma. Probably a primary. Life is good. I plan to squeeze the last drop from it.